I was diagnosed with multiple sclerosis nine months ago. I’ve been struggling with how to write about it ever since. I wanted to find something funny, or at the very least, insightful, to say about the experience. But so far I haven’t found anything remotely funny about it and my insights are banal at best, self-indulgent at worst. Mostly what I can think to say is that I hate that have MS. (See, I told you.)
But I feel compelled to try to write something, because writing is how I make sense of the world. And if ever there was something I needed to make sense of, this is it. So here goes…
My journey to MS has been a long and complicated one. For almost nine years, I had troubling neurological symptoms and abnormal brain MRIs. I had some, but not enough, evidence of the disease. Then last fall, I developed new symptoms that my doc thought might be coming from damage in my spinal cord. Turns out, he was right.
In MS, the body attacks itself by eating away at the protective covering around nerves in your brain and spinal cord. It interrupts the way messages are sent and received throughout your central nervous system. Because your central nervous system controls most of the functions of the body and mind, this means MS can affect nearly anything and everything you do. It can affect your ability to see, speak, go to the bathroom, think clearly, and/or properly use your hands, arms, feet and legs. In one person, MS can mean a bit of tingling. In another, it can cause severe paralysis. And no one can predict the course your disease will take. It’s a crapshoot with your quality of life on the line.
The day I went to get my doctor’s suspicions checked out, I walked out of the hospital and his nurse called before I even started my car. “We need you to come in to talk about your MRI.” You know you are not getting good news when you get a call like that. My doctor walked into the room. He told me I had MS while he was still standing up. He said now that it was in my spinal cord in addition to my brain, it was time to start treatment. I asked if I had to. I was scared. He said that the spinal cord is “valuable real estate,” and while none of the medications could stop the damage from occurring, they could potentially slow it down by 30%. Those weren’t the best odds I’d ever heard of, but I put my money on the drugs anyway.
So that is where I am now. I don’t know if the medication is working. I won’t ever really know because how do you measure a drug that is 30% effective at preventing something that may or may not happen? I do know that it has made half of my hair fall out, which I’ll admit with shame has been harder on me than I thought it would be. (To all the women who have gone through chemotherapy: Every single one of you is a stone-cold badass.)
I take my pills everyday and very occasionally try to sort through my feelings about the whole thing. Some moments I feel like this is no big deal and I’m stupid if I feel stressed about it. Other times, I feel a resigned sort of sadness. Most of time, however, I am just not sure how to feel about it. Feeling sad seems defeatest, while feeling upbeat about it seems naive. The quote I keep coming back to about living with MS is from American writer, Joan Didion. In her memoir, The White Album, she writes about her experience of being diagnosed in the 1960s. “I had, at the time, a sharp apprehension not of what it was like to be old, but of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.”
Leave it to Joan to get it exactly right.
Practically speaking, I am doing fine. I have been extremely lucky so far. The worst thing I have is neuropathic pain in my feet. This pain, while not intense, is constant. Like 24/7 for months now, constant. So my feet hurt whether I’m sitting still or running around. They hurt in the morning, the afternoon, the evening, and in middle of the night. They hurt all the fucking time. And it is quite possible they will feel like this everyday for the rest of forever. Sometimes I catch myself feeling frustrated or sorry for myself about this. When that happens, I almost immediately send this transmission out into the ether: I don’t mean to complain! If this is all that I have to deal with, I’ll take it! I make bargains with my MS. I’ll take the pain, if I can keep my eyesight. I will gladly accept the numbness, if I can walk without assistance. Give me tingling in my hands, but leave me control of my bladder.
So in many ways, for me, that is the worst part. At least right now. It’s the fear of the unknown. I think we all fear the unknown to a certain extent, but in this case it’s a little different because there is a clear and present danger. To take Ms. Didion’s metaphor a step further, it’s like being locked inside a building with the stranger who has the knife. You know he’s coming for you, you just don’t know when, or how much damage he’s going to do.
This bit of writing aside, I don’t sit around obsessing about my health and I try not to give into self-pity. I am, at this moment, a healthy, active woman with far more immediate fish to fry. Like the literal fish I have to make for dinner. Or the metaphorical fish of throwing away a bunch of my kids’ junk before they get home from camp. I work every single day at making sure MS doesn’t become more important than it needs to be. This involves a healthy reliance on denial. And champagne. And Pringles. But most heavily, I rely on my husband, without whom I would fold like a cheap suit. And my dear, dear friends and family, who have made this stupid disease almost worth having by being so unbelievably nice to me these past months.
So as promised, this essay was neither funny nor insightful. It actually turned out a bit more self-indulgent and gloomy than I had hoped. I’m sorry for that. But this is just my first try and it has only been nine months (and honestly it has been a pretty shitty nine months at that). Please know I am working on getting back to the annoyingly positive attitude I once had. And next time I write about this, it will be filled with exclamation points and smiley faces. Because who doesn’t love writing filled with those? For now, I just thank you for reading. I’m not sure I made sense of anything by writing this, but I do feel a bit lighter for having shared it. And that would not have been possible without you!!!
The other night my 13 year-old son told me I wasn’t cool. He didn’t say it in a mean way, it was more like he was just stating the obvious. You are not a platypus. You are not the Queen of England. You are not cool. I was wounded. Here is the conversation that followed:
Me: What are you talking about? I’m pretty cool! (I gesture to my gray Chuck Taylor’s as evidence.)
Son: Well, you’re cool for a mom…
Me: Cool for a mom? What does that even mean?
Son: Like, if you went to a Mom party, all the other moms would talk to you and stuff.
Me: And if I went to a “regular” party?
Son: (pauses, then eyes fill with pity) Well…
Apparently, a pair of Chuck Taylor’s does not a Cool Mom make.
As much as my pride demanded an argument, after I thought about it for a moment, I realized he was right. First of all, anyone who thinks about whether or not they are cool, is most definitely not. Secondly, if I’m being honest, I never was all that cool to begin with- and I’m sure aging hasn’t done me any favors. Thirdly, and perhaps most telling, is that I’d rather go to a party filled with moms than almost any other sort of party in the whole world.
Embracing my epic uncoolness, however damaging to my ego, has had one unexpected fringe benefit. I think it actually makes me a better parent. I realize that don’t want to be the mom who thinks she’s just one of the gang, like Amy Poehler in Mean Girls. That is just sad. And more than sad, it is monumentally unfair. If I’m busy trying to be my children’s friend, then I’m sleeping on the job of being their mother. I know there are people out there who will disagree with me, but I think trying to be friends with your kids, at least while they’re young, does them a huge disservice.
Kids need structure and friends don’t provide structure. When is the last time you’ve made your friend go to the bathroom before she gets in the car for an hour? Or reminded her she will have to pay for her next cracked iPhone screen? Or screeched at her, “Because I said so – that’s why!” (Note: If you do this, you are mothering your friends and you should seek help immediately.) They may not know it, but our kids crave limits and boundaries; it makes them feel safe.
In addition, being overly close with your child can be confusing to them when in adolescence they begin the process of individuating from us. Children need to separate a little from their parents in order to grow and gain a sense of who they are, independent of us. Kids who aren’t able to do this, maybe because they feel guilty or simply don’t want to hurt their friend-parents’ feelings, can struggle in adulthood with decision-making and anxiety. And is there anything less cool than a 25 year-old who can’t pick out a tie without calling their mom for help?
It isn’t that I don’t want my kids to like me. Because I actually do. More than I care to admit. It’s just that that is not as important to me as churning out a person who will grow up to become a happy, healthy, productive member of society. After all, that is the job description under the heading, Parent. And the heartbreaking paradox of the job is that if you do it well, your kids won’t need you anymore. But maybe, hopefully, even though they don’t need you, they will still want to have you around. Even if you’re not cool.
I’m committing one of the cardinal sins of writing by basing this entire essay on a cliché, but here goes: Motherhood changes you. The thing is, clichés become clichés for a reason. And the truth is that the experience of becoming a mother, whether by nature or nurture, impacts a woman in fundamental and profound ways. It also affects a woman in superficial and trivial ways. It isn’t that you become an entirely different person the moment you hold your newborn baby in your arms, but I do believe the experience is a universally transformative one.
It is also a knife that cuts both ways. Because some of the changes you undergo when you become a mom are good ones; others, not so much. Never is this more apparent than when a new mother is in the company of an old more experienced mother. Us old seasoned mothers love nothing more than laughing at observing the ways our formerly childless friends transform from free and easy, up for anything, let’s-eat-at-8 women into sleep deprived, over-analytical, was-that-apple-you-gave-Billy-organic-locally-sourced-non-GMO-and-cruelty-free mothers. We love this because we’ve been there. And we too were mocked by the old bags wise women who came before us who rolled their eyes at our bath thermometers and bottle warmers. And they were mocked by their elders for using disposable diapers and seatbelts. It’s the circle of life.
Every new generation of mothers make changes that seem crazy to the ones who’ve gone before. But there are a few constant changes, if you will, in the experience of becoming Mom that persist regardless of the latest parenting trends.
Changes to Your Body
I will never forget when I went to see my OB/Gyn after the birth of my first child. I, with the wide-eyed innocence of a first-time mother, asked her when I could expect to lose that little pouch of fatty skin over my c-section scar. My doctor, herself the mother of four, looked at me with a perfect mixture of compassion and pity (and maybe a soupcon of amusement) and said, “Oh honey, that won’t ever away. That is yours to keep.” At the time, I thought she was wrong. I’d diet and exercise and eventually the only bodily evidence that I’d had another human being living inside my abdomen would be a tiny pink scar. Thirteen years later, I know she was right. That pouch ain’t ever going away, and no amount of yoga or gluten-free cake is going to change that. Be it a c-section pouch, disappearing waistline, saggy boobs, melasma, stretch marks, or all of the above, having a baby leaves an indelible impact on our bodies. Don’t get me wrong, it’s a good trade. But still. Still.
Changes to Your Level of Paranoia
The moment you realize that you are the first line of defense for another life form, the world becomes a much scarier place. Sharp corners, uneven pavement, hot plates, treadless socks, top-heavy children – they all become ER visits waiting to happen. You’ve heard of people who see the as glass half-empty? Well, new mothers see the glass as half-full. Of poison. And sitting too close to the edge.
Changes to Your Relationship with Control
One of my favorite examples of new motherhood is when my dear friend came to visit me from St. Louis with her newborn son for the day. In addition to the arsenal of baby supplies she brought to my house, she also packed a tiny Tupperware full of her own dishwashing liquid. You see, she felt she had to use her own soap because she feared mine might contain – well, I really don’t know what she thought it might contain – but whatever it was, it was far too dangerous to wash her son’s bottles with. This happens to you with your first child. You love them so much that you want to do everything within your control to make sure they are safe. So the scope of “everything within your control” widens to epic proportions. You over think. You obsess. You try to manipulate everything that comes in contact with your little one to make sure it will result in the optimal combination of health and happiness. You, in short, become a control freak. I’ve seen even the most laid back, hippie chicks fall victim to this mindset. And they’re the worst because they don’t think they’re controlling, “but could you just please make sure Susie doesn’t have any gluten or red dye No.4 at the party –it makes her irritable. Oh, and we use a positive reinforcement parenting model so if she accidentally bites your kid try talking her through what she’s feeling.”
Changes to Your Clock
Sleeping late now means anything past 6:30am. And if your phone rings at 10pm, you immediately ask, “Who is calling so late?”
Changes to Your Sex Drive
As a mother of a newborn you already have one needy creature who is all over you all the time. Your excitement about another such creature is, generally speaking, low.
Changes to the Way You Talk
Even though you have a master’s degree in linguistics, you refer to yourself in third person. You say the word potty. You talk for your infant daughter. You rhyme everything. The words you cannot rhyme, you add “ie” to the end of. Your voice is so high that only bats and coyotes can hear you. You give nicknames to all food including, but not limited to: nanners, noodlies, chick-chick, wawa, and num num sketti.
Changes to What You Think Constitutes Interesting Conversation
You used to talk about campaign finance reform and the mounting national debt, but these days you are more likely to be found discussing the color, size, shape, and frequency of poops. Here is a reality check, new mommies: this is not interesting conversation to anyone, with the possible exception of your child’s pediatrician. The same goes for discussions of sleep schedules, attachment parenting, feeding habits, nipple shields, episiotomies, potty training, and/or boogars.
The good news is that most of these changes settle with time. Eventually, you loosen up, regain your normal speech patterns, and stay out past 11pm. And the best part is that in the end, you’re left with the kinds of changes you actually want: A heart that is infinitely bigger than it was before. Patience that you didn’t know you were capable of. An amount of love and joy that you never knew was possible.
And stretch marks. Those are yours to keep.
NOTE: This is a reposting of a piece I wrote a few years ago. Consider it a public service announcement on how to steal candy from children…
There is only one thing that tastes better than free candy. And that is candy you steal from your children. Candy you take out of your child’s Halloween stash somehow tastes sweeter, lasts longer, and seems less caloric than candy begotten from other means. I rationalize stealing my kids candy in two ways:
1. I think of it as a luxury tax. I bought the costume. I took them around from house to house. And I will most certainly have to deal with the consequences of their massive bellyaches once they’ve snarfed down eleven pounds of candy in half an hour. The way I see it, I deserve a percentage of net sales.
2. I tell myself I’m doing it for them. No responsible parent would allow their children to eat triple their body weight in sugar, would they?. By dipping into their supply, I am actually protecting them. I am being a good parent. I am acting righteously. (Refer to earlier post on How to Feel Righteous Everyday: A Cheater’s Guide).
But beware: Once children reach the age of four (or possibly a precocious three) they will protect their candy with their lives. If you are going to be successful in your quest, you must have a game plan. You must shut out all thoughts of selflessness and altruism. You must come prepared for battle. Here are a few bits of advice to help you along the way:
- When they dump their candy out on the floor to bask in its gluttonous glory, take note of any doubles and triples. Start with these items first. The earlier you can extract them, the better.
- Never, ever make the mistake of asking or worse, saying something like, “Let’s see, what do we have here…” This causes instant foodstress in kids and puts them on the defensive. You want them unaware.
- Tell them you have to check the candy for razor blades or other forms of tampering. The only way to know for sure is to test it out yourself. That’ll buy you at least a couple of pieces – but won’t work forever. Most kids I know would rather risk being poisoned than give away their Halloween candy.
- You can always pull the classic, “Look over there! Is that The Great Pumpkin?” and while their sweet little heads are turned, you swipe a bag of M&Ms or a Payday (if you roll with peanuts).
- Don’t be greedy. Never take the King Size Twix or the cute little homemade marshmallow pops the Martha-wanna-be down the street gave out. You’ll get busted for sure. Stick to the common stuff – your Hershey’s mini’s, your individually wrapped licorice, your Tootsie rolls, etc.
- Obviously, when they are at school and/or asleep, you have free reign to pillage at will. But be aware that some children take inventory and will know when something goes missing. You will pay the price in shame if you get caught. And possibly in actual candy as well. I’ll admit I had to do some re-stocking during the Reese’s Peanut Butter Cup binge of ’08.
- Kids fear the unknown food. Play upon their natural pickiness. You can pull out the lesser-known Skor bar and say, “You don’t like this, do you?” and before they even know what hit them you’re enjoying that rich toffee goodness.
Best of luck in your efforts tonight… Happy hunting and Happy Halloween!
When I was recently asked to write an article for a magazine about mothers in the workplace, I immediately thought: No, I’m not going to write about that. Why, you ask? Well, for starters, I don’t really work. With the exception of this column and the odd freelance article, I haven’t held a paying job in 13 years. (Yes, I know that being a mother is work. More on that later.) The second reason, and the more important one, is that I am a big fat chicken and really don’t like to write about controversial topics – and I’ve always thought of working vs. stay-at-home mothers as a controversial topic.
But the truth is that it isn’t really. Not anymore. Like coconut water and Kimye, I think the so-called “Mommy Wars” have been hyped up by the media and have little to do with real people’s lives. Maybe there was once a rift between the two factions back in the 1980s when the workplace was just opening up to professional women, but we live in a different world today. Thankfully we have options as mothers, and while we may not have shattered the glass ceiling yet, we have certainly shattered the glass umbilical cord. (Um, wait. No, that’s not a thing. That’s gross. You know what I mean though, right?) We have shattered the theory that women must stay in the home and raise the children while the father goes off to work. In today’s world, the debate of whether to work or stay home is more likely to go on inside a woman’s own mind than play out in any kind of public forum.
Most, if not all, of the women I know feel no animosity toward other mothers because they work outside the home or because they don’t. Over the past 13 years, I’ve talked to hundreds of mothers and not a single one has ever said anything disparaging about a mom on the “other side” just because she is on the “other side.” We might disagree about sleep schedules, formula vs. breast milk, and the number of acceptable days in a row one can wear yoga pants– but these issues have nothing to do with employment status. In the end, I think we all want to feel fulfilled in our daily lives, and no one much cares if you find your bliss in the boardroom or in the playroom.
The decision to work or not for moms is often a financial one, but not always. Some mothers work because they have to, some because they want to, and many because of a complex equation of the two, the product of which is then multiplied to the power of Guilt. It can feel like a lose-lose-lose situation. If you stay home, you lose the opportunity to build your career; if you go to work, you miss out on special moments with your child; and if you don’t have a choice, you feel utterly trapped.
So maybe the whole Mommy Wars discussion should be less about working vs. stay at home mothers, and more about how our culture still hasn’t adequately responded to the reality that roughly 70% of women with children are working. Instead of a hyped up decades old argument, maybe we should start a frank discussion about the dismal maternity leave policies, lack of affordable childcare options, and the paucity of support for mothers in the workplace? Maybe we should talk about introducing public policies that aid women who make the difficult choice to put their working lives on hold to raise children? Maybe we should be discussing the insanity that a working mother makes 73 cents on a similarly qualified man’s dollar?
These are subjects I think all mothers, and a good number of other people, would agree are worthy of public debate. This pre-fab construct of pitting mothers against mothers diverts attention from the real and serious issues facing so many of us as we are busy, you know, proliferating the human race. So maybe what we need instead of the Mommy Wars is a Mommy Revolution?
(Oh, look! I guess it wasn’t so hard to write about a controversial subject after all.)
Let’s face it: Most of us are not raising professional athletes. Most of us are probably not even raising college athletes. Competition being what it is these days, I think most of us are going to be lucky to raise an intramural athlete. So the sports-induced craziness seen at the courts, fields, and tracks on any given weekend seems a bit excessive to me.
I was recently at my son’s basketball game and a woman whose child was on the other team kept yelling, “C’mon guys-you’re bigger than them! You’re stronger than them! You’re better than them! Win the ball! Win the ball! WIN IT!” I should mention that at the time they were crushing us by like 50 points. Everyone in the whole gym could hear her – but I had to wonder, could she hear herself? Was she just so caught up in the Sunday morning drama of a midsized, regional, U12 basketball tournament that she lost sight of the fact that she was yelling insults at children? And that isn’t the worst thing that has happened, by a long shot. Everyone I know has a story about adults coming to blows, or cussing coaches, or making kids cry during games. This kind of child sports-induced mania is, sadly, becoming a cultural norm.
To combat this, I’ve made a list of some things you might want to keep in mind as you watch your child in his or her sport of choice. If you already know these things, then you might want to cut this out and slip it to that red-faced parent sitting next to you on the bleachers. You know, in the spirit of goodwill. I have titled this list: It’s Just a Game: Calm the @%&* Down
- There is a 99.993% chance that your kid is not going pro. Calm the @%&* down.
- Unless your shirt says “Coach” on it, you are not the Coach. If you aren’t clear on what this means, it means that during a game you should not be yelling instructions to the players. No matter how vital you believe your advice to be.
- The only words you should ever say to a referee are, “Thank you.” They are doing their best. Even when they may make a mistake, it is almost never on purpose. Calling games isn’t a science; sometimes a bad call works in your favor, other times it doesn’t. File this under the category: Life ain’t fair.
- Your child should address their concerns with their coach by themselves. You should not get in your kid’s coach’s face with complaints about playing time, position assignments, or coaching decisions. If your child has a question, they should address it themselves. If they can’t, then either A.) They aren’t old or mature enough to be in competitive sports, B.) It isn’t that important to them, or C.) They’ll learn the very important lesson that they won’t get answers to questions they don’t ask. Either way, you asking for them isn’t helping anyone.
- Your kid is watching you as much as you are watching them. You know those turdlets who make nasty comments to other players on the field during a game? This is a learned behavior. I’ll bet you a year’s supply of Reduced-fat Pringle’s that their parents are doing the same thing on the sidelines.
- You should never say anything to anyone else’s kid other than a compliment. I’ve heard parents yell things at kids on the other team that I wouldn’t say to my worst enemy. This is never, ever okay. Even if the little bugger raked his cleat against your son’s Achilles. You are the adult, and as such you must refrain from name-calling. (An unfortunate, but undeniable, artifact of adulthood.)
- You are not on ESPN. If you find yourself reporting your child’s stats to anyone who didn’t specifically ask, you should stop. Immediately. At best, this is totally uninteresting; at worst, it is supreme douchebaggery.
- Your child is not as good – or bad – as you think they are. You tuck them into bed at night. You take care of them when they’re sick. When you look at them, you can still see the sweet little three year-old they used to be. You cannot possibly form an objective assessment of their abilities at sports or anything else. It is a good thing this is not your job.
- Win or lose, the lessons are the same. The 25 year-old version of your child will probably not need the technical skills they are learning in their sport of choice. But they will need to know how to be a team player, how to lose gracefully, how to win gracefully, how to show up when they don’t want to, how to stand in someone else’s shadow, how to work with difficult people, how to know when it’s time to lead and when it’s time to follow. They may not become professional athletes, but they will become citizens of this world. And they will use the lessons they learned playing sports during this magnificent ball game we call life.
- There are only 6 words a parent needs to say to their kid after a game: “I love to watch you play.” This has actually been documented by researchers and other sciencey-people. Plus, it just makes good sense. Our kids just want us to have fun watching them. They want us to be proud. They want us to be there. They want us to be happy. (But I think if you’d ask them, they’d also say that above all, they want us to be… quiet.)